Will you help me make a difference on behalf of all Canadians living with ALS?

​I have initiated a letter-writing campaign to hold our government accountable to their promise of supporting national efforts to find a cure for ALS at the earliest opportunity! Meaning, we want to see direct and targeted funding towards research for ALS on the 2019 Federal Budget.

We have made it easy for you to participate by clicking on the link below, in which you will find our e-advocacy website where you can email your MP directly. I am also asking that you send a good old fashioned letter by mail (postage is free!). We have created a generic letter that is easy for anyone to send out. Feel free to personalize, I did and have included my personalized version below. After I sent it, I actually met with my MP who promised to support us.

Many thanks to Dad for writing the initial draft of the letter with the help of Mom and Chelsea.

Thanks to Eddy "Let's Roll" for inspiring me to do more, for his french translations, and his unstoppable advocacy.

Thanks to Bill for his petition e-1451, which the government responded to by stating they have given some money in the past, and basically answered with spin and of course no real answer. Although it may not be a "win" I see it as a stepping stone and continued pressure that they cannot ignore if we keep asking!

Thanks to ALS Canada for their efforts and collaboration in helping us initiate this campaign and supporting us in making our voices as loud as possible.

And thanks to you, for making a real difference to people who are suffering.

Generic MP Letter

I am writing as one of your constituents to express my concerns for Canadians living with ALS.

ALS is a disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body. As the muscles break down, a person living with ALS will lose the ability to walk, talk, eat, swallow and breathe. It is a DEATH SENTENCE. There is no cure and most die within 2 to 5 years of being diagnosed.

ALS is more common than you might think; it has a high incidence/low prevalence rate. The incidence of ALS has an estimated lifetime risk of 1 in 400. The reason there are 3,000 Canadians living with ALS is because of its devastation and how quickly it kills.

The federal government has a duty to protect the lives of Canadians. Whenever there is an event that kills Canadians, the government does whatever it can to prevent this from happening again. Where is the same resolve in treating the killer ALS?

On April 5, 2017 Motion-105 was passed UNANIMOUSLY by our Members of Parliament:

That, in light of the death of over 1000 Canadians each year, including the tragic loss of the Honourable Mauril Bélanger, former MP for Ottawa—Vanier on August 16, 2016, as a consequence of Amyotrophic Lateral Sclerosis (ALS), the House:(a) reiterate its desire and commitment to, in collaboration with provincial and territorial stakeholders, combat ALS via research and awareness; and(b) call upon the government to play a leadership role in supporting ALS research, and to support national efforts to find a cure for ALS at the earliest opportunity.

The ALS community has never been as hopeful as with the passing of this motion. That changed when the 2018 budget presented ZERO targeted dollars towards ALS research. Over a year and a half later, we are left waiting and left dying. Where is the action supporting M-105? Where is the government leadership role?

The ALS Society of Canada has authored a strategy, which answers this motion. It’s recommendation is that the Government of Canada invest $35 million over the next 5 years in CAPTURE-ALS, a groundbreaking, inter-disciplinary, foundational project that will build capacity for research internationally and across Canada.

Will you support the ALS Society of Canada’s ask of targeted federal funding towards ALS Research in the 2019 Federal Budget?

ALS is not an incurable disease it is simply grossly underfunded. Let ALS stand for ALL LIVES SAVED!

Personalized Letter to my MP

Karen McCrimmonMember of Parliament for Kanata-CarletonHouse of CommonsOttawa, OntarioK1A 0A6 September 4, 2018Dear Minister McCrimmon,​I am writing as one of your constituents to express my concerns as someone living with ALS, and to ask for your help.

I was diagnosed with ALS on September 19, 2013 at the age of 41.

At the time, I was working for the Canadian Mental Health Association. I was an art therapist facilitating groups for individuals living with both mental health and substance use disorders.

ALS stole my career, my home, my future, my sense of adventure and my control. ALS is a serial killer that has a hold of me and there is no treatment. It is slowly stealing my physical abilities, bit by bit, day by day, until I become paralyzed in my own body, as my mind remains fully aware of what is happening to me. Even then, it isn’t satisfied, it will keep attacking my body, and will take everything from me, including my last breath.

ALS has yet to steal my voice, and that is why I am here today, to advocate on behalf of all Canadians. For those we have lost, including Mauril Belanger and Brian Parsons, for those who are living with, and those who will be diagnosed with this devastating disease.

ALS is more common than you might think. The incidence of sporadic ALS shows little variation in the western countries with an estimated lifetime risk of 1 in 400. (US NIH)The reason there is a relatively small number of Canadians diagnosed with ALS at a time, is because of its devastation and how quickly it kills.

The federal government has a duty to protect the lives of Canadians. Whenever there is an event that kills Canadians, the government does whatever it can do to prevent this from happening again. Where is the same resolve in treating the killer ALS?

On April 5, 2017 Motion 105 was passed unanimously by our Members of Parliament:

That, in light of the death of over 1000 Canadians each year, as a consequence of ALS, the house a) reiterate it’s desire and commitment to, in collaboration with provincial and territorial stakeholders, combat ALS via research and awareness; and b) call upon the government to increase funding for ALS research, and to substantially increase national efforts to develop an launch a comprehensive strategy to assist with the eradication of ALS at the earliest opportunity.

The ALS community has never been as hopeful as with the passing of this motion. That all changed when the 2018 budget presented ZERO targeted dollars towards ALS research. Over a year and a half later, we are left waiting and left dying. Where is the action supporting M-105? What is the comprehensive strategy?Minister McCrimmon, will you support the ALS Society of Canada’s ask of targeted federal funding towards ALS Research in the 2019 Federal Budget?

Will you be a champion of our cause through advocacy by supporting the Federal All-Party ALS Caucus and increase awareness by attending events supporting ALS such as the Annual Walk to Defeat ALS and Annual Hike for ALS?

Should you require further information, please do not hesitate to contact me.